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Please Stop Asking This Question About My Child With a Disability

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Please, stop asking, “What’s wrong with her?”

This year, Justine received her first wheelchair, and oh man the freedom she’s gained with it! Between her Ehlers-Danlos syndrome, chiari malformation and other issues, the wheelchair has been a significant help.

But along with the freedom she’s gained, she’s received a lot of stares, questions and even some harsh comments. One of the most common questions we’ve gotten has been, “What’s wrong with her?”

Nothing’s wrong with her. She’s just a little girl, with complicated genetics.

No matter how well intention the question is, it always cuts deep to hear. When asked, I always explain why she uses the wheelchair, “It helps reduce her pain, fatigue and greatly reduces the amount she falls and gets injured.”

No one ever wants anything to be “wrong” with their child. Her medical conditions are part of who she is. It’s not like a cold and she’d be back to her normal self after. In a way, her conditions help form who she is. Trust me, she’d be a completely different child if she didn’t have these conditions.

So to us, nothing is wrong with her. Justine is just Justine. There are so many better questions to ask, or better ways to ask them even. Or better yet, ask her! Justine is 5 and loves it when people talk to her, she will chat almost anyone’s ear off.

“I like your chair! Can I ask why you use it?” or “Can I ask what condition she has?” There’s many ways to ask the question. If you ask her she will tell you usually, “My legs hurt and I fall a lot.” And then go on about how it’s pink and the cushions have moons, or show you how she can spin!

The thing I hate most about when people ask, “What’s wrong with her?” She hears them ask. She hears them say something is wrong with her. Afterwards, her daddy or I are left to pick up the pieces.

With all the medical stuff that goes on, she’s already experiencing anxiety. So when people ask what’s wrong with her, just even the look she gives me is heartbreaking. She’ll often ask, “What do they mean what’s wrong with me?” “Why would they ask that?” “Mommy it makes me sad when they ask that.”

She’s young, but she’s incredibly bright. If asked, she loves telling people about her wheelchair, and show them how she can spin. She will tell you all about her kitty AFO braces, and then tell you about our two kitties at home.

Next time you see a child using any kind of mobility aid and want to know why, please find a polite way to ask. Whether you think so or not, children listen, even when you don’t think they are, and their feelings get hurt.

Originally published: December 14, 2018
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